#chronic illness pain chronicles

[deosilplanarglitches]

hm, interesting. these "allergies" i caught feel a whole lot like covid 🧿

[morimyth]

If I can't talk to a human, I'm not going.

[justsomerandomgay]

abled people don’t seem to understand why i try to avoid getting a cold like it’s the plague, like mate im literally chronically ill, i don’t need another illness on top of it!

[dodger-thirteen]

"Did you see a doctor?"

What the fuck is a doctor going to do about it besides charge me money to wait for an hour just to shrug at me?

[whispers-into-the-void]

stuck in the "need music to get stuff done but all music (even whale sounds) hurts my ears so i'm just stuck here battling between the anxiety of pending work and the physical pain of sound.

[mercyandme007]

My crossover story

Mercy is the start of this story, she is a cattle dog mix. Being pulled off my feet by my 35 lbs leash lint. Every time I saw a person or dog, bolt the other way, in my head I'm begging her to not bark and draw attention. She barks I'm immediately ashamed that my dog can't be the perfect family dog. I dealt with this for 6 months until, one day she was barking at a friend that came over and I lost it. I could not deal with any more, Mercy had to change. I began to look into her problems, she had excitement/nervous reactivity, I deducted. I looked into different training methods, and I found balanced training. It looked good cause the dog using e collars and prongs were well behaved and did not react to anything, even if they were nervous. I wanted people to compliment my dog for doing an heel and not being distracted by anything. I tried doing an +R approach to dog training, but I did not really know what I was doing and the training process was not going fast enough for me.

yank yank yank* that is what I did to my dog when I bought a Herm Spernger prong collar. She was still not behaving as a wanted, she still would pull when I corrected her and still react to people. So annoying, so I *pop*pop*pop* some more. My dog was so shut down, I did not understand animal behavior at the time and though I was not being harsh enough. I keep up using the prong collar for about 8 months, I began wanting her to be a service dog. Yes she was still reactive, I really just wanted to take her everywhere with me at first. However I do have some disabilites that qualify for a service dog. I did not want to fake a service dog, so I tried correction based training to task train her.

That failed MISERABLY, So I reluctantly looked into +R training. I was so against the idea of allowing a dog to make a mistake and not correct her. Allowing her to react seemed so contradictory to training, like what the heck?? Giving your dog a treat for barking at the trigger, nuh uhh. I slowly got invested into the FF dog training style. Learning animal behavior, and how my dog’s tail should not be tucked out of fear while training. I switched her training to using a flat collar and clicker. This was the best thing I have ever done, she really understood what I wanted and mostly stopped reacting. Merc lit up, she LOVED training with the clicker and still does. After about 2 months of switching to +R, her training had gone farther in almost a year of using balanced training.

She started learning tasks that could help me everyday. I started by getting rid of poisoned cues that I had for tasks I had tried to teach in the past. Mercy knows some psychiatric task and hopefully will be learning some medical alert tasks, along with non weight bearing mobility, such as item retrievals. I stopped correcting her for making mistakes and being a dog, sniffing, and looking at the environment around her. I stopped flooding her while training, thinking about how she would feel rather then how I would look to the public. She is doing amazing with service work and I'm so glad I made the switch from balanced to +R.

Thanks to much for reading

@mercy_and.me

[lindwurmkai]

I think I need to move away from the framing of "missing out on teen experiences" (or experiences associated with any other age range) and instead put it like this: there are things I would have liked to do in the past, for which it may now be too late, that I never got to do. And there are things I would like to be doing now that I can't, as well as things I would like to do one day in the future that I'm afraid I will never get the chance to do.

That sucks, regardless of age. But it is highly individual. Some of the things that I wish I had done, other people simply didn't do because they didn't want to. Some people also didn't get the chance, but for a completely different reason. When my fellow LGBTQ+ folks talk about "catching up on teen experiences in their 20s", all I can think is that being queer didn't prevent me from experiencing those things, it was chronic illness, and it did not magically stop in my 20s. Or 30s.

There is no point in continuing to hope I will get to "catch up" one day. And to say that I have "less experience" than other people my age is not even truly accurate because someone who has not experienced chronic pain or inpatient treatment or any of the other unpleasant things I have gone through in these almost 37 years of life may well think of me as the "more experienced" one.

For any age-associated experience you can think of (other than basic childhood milestones), there's someone out there who didn't do it simply because they were poor, because it wasn't part of their culture, because they didn't feel like it, and so on. Whatever they experienced instead was also an authentic [insert age here] experience. I have been a teenager, I have been someone in their 20s, and I have been someone in their early to mid-30s. I was no less those ages because my experiences didn't look like "everyone else's", and they certainly were experiences.

Now, you can be inexperienced in one particular area of life - sex, romance, friendship, work, living on your own or whatever. But there will always be people out there who are older than you and in the same boat. They are still older than you.

[seven-oomen]

So wish me luck, but I am talking to the municipality tomorrow about getting a permanent wheelchair. Since the test at the amusement park went really well and it made a world of difference. I can also see this being an ideal solution at conventions, long (accessible) walks, day trips, holidays/vacations, etc.

Right now I am borrowing a standard model which is clunky and heavy (17-20 kg 37-44 lbs). And that works okay, it does its job.

But for a permanent solution I need something lighter so self propelling is much easier. I did find one, it's not too pricey (about 360 euros with the options I want all included), but it's not cheap either.

And there might be a chance the municipality (wmo) will cover it. I have a no already, it won't hurt to ask, and the only way is up. Either they cover it, or I can save up for one.

It's gonna be this one:

It weighs 12 kg max (26 lbs) is collapsible, has anti-tip wheels, adjustable arm rests, collapsable back, adjustable push handles, a belt, leg rests, and i want a cane holder.

So that's what's up. That's what I've been doing.

Oh and the trip with my sister went great, we had so much fun, and the wheelchair was like magic. I had SO LITTLE pain the days after! Like I still had pain, but compared to comic con when I came back with a solid 8-9 and a 10 on the fatigue scale, and now I came back with a 3-4 on the pain scale and a 6-8 on the fatigue scale.

HUGE DIFFERENCE!!!

[nataliecstrange]

Strange Chronicles 🦇

I thought this may be the right time to start sharing some digital journal entries, is this type of content something you’d be interested in seeing?

If you like my work consider joining my Patreon

[aesthetic-solar-space]

As some of you know I am chronically ill, I even come from a family of people who suffer from different chronic illnesses. That said I thought why not create a place where we can all get together and feel safe with the understanding we are not alone. Below is a link to a new discord server for just that. Hope to see you there! Love yah!!

[deosilplanarglitches]

it's "knock me tf out" o clock where tf is the honk shoo

[morimyth]

Time to spin the Wheel of Possibility!

I'm just looking for interesting ways to frame these posts bc I think it's funny and laughter is the best medicine, or whatever it was Robin Williams said.

[justsomerandomgay]

i remember being ten years old and wishing to die rather than experience the pain i was in yet still my parents and my doctors didn’t believe me. sometimes it just hits me. that wasn’t a normal experience for a ten year old, was it?

[dodger-thirteen]

Does anyone have good recommendations for canes/walking sticks? I've been looking for a decent shop for a bit now, but I have a few specifications that I need to factor in, so suggestions are welcome.

[woodsy-hoe]

turns out my old doctor and neurologist were actively not doing their jobs bc they ignored huge signs and symptoms of my disease getting worse lol 🤪

[fyeahedmundpevensie]

Currently having a chronic illness flare and I'm just imagining Edmund insisting on babying me to the point where I'm not allowed to get out of bed. I don't have that luxury at the moment being an adult with tasks to perform but it would be nice.